Since 2010, Allison Breininger has been her husband Sean’s primary caregiver as he battles a rare genetic disorder that can cause bone marrow failure, cancer, and other systemic issues — all of which Sean has suffered from.
“Sean had a bone marrow transplant and then he developed cancer of the tongue, which led to removal of half of his tongue, and then bladder cancer, which led to removal of his bladder and prostate, plus throat cancer twice, gum cancer multiple times, and about 150 skin cancers,” says Breininger. “Each of these has led to new complex tasks for me. After his tongue surgery, he wasn’t able to take anything by mouth for quite a while, so I crushed his meds and gave him medicine, food, and water through a feeding tube. I also performed intense wound care after that surgery because they took skin from his arm to patch his tongue, and I’ve also given him IV antibiotics at home. The learning, maintenance, and intensityof these tasks was A LOT. The stakes were high and I was in charge. It’s a lot to manage and bear.”
Caring for Sean has made Breininger acutely aware of the physical, mental, and emotional stress that caregivers face, particularly when caring for a spouse with head and neck cancer, which is especially difficult as these cancers can affect a person’s appearance and their ability to eat, speak, and feel like themselves.
In response, she created The Negative Space, a community that provides support, information, and a dash of humor for caregivers. She also co-hosts the In Sickness podcast for caregivers of spouses, of which there are an estimated 5.7 million in the U.S.
Contributing her voice to the Embracing Carers® initiative of EMD Serono, Allison Breininger wants to raise awareness of the many challenges that caregivers face and provide suggestions to help head and neck cancer caregivers cope with the stress of the experience.
“One of my favorite quotes is from Nakita Valerio, who said ‘Shouting “self-care” at people who need community care is how we fail people,’” says Breininger. “Caregivers need more support at every level, especially when helping a spouse or loved one manage a life-changing disease. Ultimately, caregivers need caregivers too.”
Allison has a MA in Education and spent twenty years teaching, training, directing, coaching, and creating content in the realm of education. A caregiver for her husband since 2010, she experienced firsthand that caregivers are in the negative space: vital yet overlooked and unsupported. Fueled by what she saw, Allison created The Negative Space as a way to use her experience and skills to change the way caregivers are seen and supported. Through The Negative Space, she shines light on the realities of caregiving, provides direct services to caregivers and educates and equips those who support them with concrete tools and strategies.
For more information and resources for caregivers, please visit
Thank you,
Glenda, Charlie and David Cates
